I have had a history of clinical depression for 33 years. Symptoms of my depressive episodes, apart from the huge dip in mood, include severe fatigue, alternating between insomnia (unable to sleep) and hypersomnia (sleeping too much), and changes in eating habits. Focus and concentration are reduced to zero and I become tearful, irritable and often suicidal. All common symptoms of depression.
My psychologist, who has known me now for over 20 years, was the first person to analyse my symptoms and their recurrence, recognising a pattern of high levels of activity/stress (good and bad) followed by post-exertional malaise. In other words, when I felt well I worked my butt off, and then suffered the consequences when I was laid low by total exhaustion, mental and physical.
ME/chronic fatigue syndrome was his diagnosis. This was backed up my by GP and medical history so that now it all makes sense.
I can’t believe however that I have so many symptoms common to CFS sufferers that it remained misdiagnosed for so long but then not many Doctors/physicians/GPs want to diagnose ME/CFS as it is clearly a difficult and controversial decision to make with no apparent “cure” to offer the unlucky patient.
Looking at my medical history I have a number of ailments/illnesses which are common to ME/CFS sufferers. They include;
Asthma-first attack aged 3
Hay fever (so severe that I had to have steroid injections to stem the symptoms and have just finished a 3-year course of immunology injections to relieve the symptoms permanently)
EPV-Glandular fever after repeated bouts of tonsilitis. Tonsils were finally removed when I was 22 years old.
Rubella (German Measles)
Chickenpox x 2
Shingles (Cocksackie virus) twice-first attack aged 12
Allergies and food intolerance
Repeated bladder infections operation required
This is to name but a few of those I can remember. It is strange to think now that the physical and mental/emotional symptoms were treated separately and that certain connections were not made. Perhaps we need a more sophisticated computer system within the NHS which can analyse symptoms and make the connections for GPs to consider? Is this possible?
I’m not sure but if those connections had been made earlier I would have managed my health much more effectively and I would have had choices. Choices, in any walk of life, are a luxury and I would have welcomed them with open arms. To have a choice is to have control. I would have liked the option to control my illness a long time ago and maybe I would be more content with my reduced activity levels now.
Sadly, there are too many doctors who really don’t believe CFS is real because there is no test for it. They don’t like the idea of something being diagnosed by figuring out what it isn’t. A lot of people don’t want to hear what it isn’t either. They want to know what it is with the test to prove it. Keep fighting for you.
I don’t think they’re very good at diagnosing ME/CFS yet. I had many of the same early signs and symptoms but have only just got a diagnosis.
I asked one of my doctors after the tests all came back normal and he suggested that I get counseling, “If it is all in my head, why does my body hurt so much?” He had no answer for me. Through my own research, I learned a lot about what I call the Mind-body connect, actually more like the Mind-body-spirit connect. If one is out of balance the other two suffer. If my body is sick my mind is foggy and spirit/emotions are low. If my spirit/emotions are low my body gets sick more easily. When I started strengthening my health, I worked on making changes in all three areas. I’ve struggled with this for over 40 years don’t feel alone.
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